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Tuesday, 12 February 2013

IMPROVING RECRUITMENT - HINDSIGHT, INSIGHT & FORESIGHT

Improving RECRUITMENT using Hindsight, Insight and Foresight

Developing partnerships with the public to increase the delivery of research studies

This was a workshop I facilitated on February 13th organised by Ros Yu, Patient and Public Involvement Manager for the Joint Research Office - a partnership between University College London, UCL Hospitals NHS Foundation Trust and the Royal Free Hampstead NHS Trust. The workshop is part of the wider programme of Building Research Partnerships and was open to researchers and the public. The notes below capture the essence of the discussions and are written mainly to advise research professionals.

Involving patients, carers and the public has become a standard and expected element in almost all NHS research. Increasingly, we see examples of patients assisting with the prioritisation of research ideas, helping to shape the research questions and providing insight from their experiences.

The main examples offered here mainly follow a traditional model of Involving the public and introduces ideas for thinking differently in future. in the meantime it has made a lot of research more relevant, improved research outcomes and helped changed the whole environment of research.

But what about the RECRUITMENT?

There are an increasing number of examples of where involvement has made a significant difference to the delivery of research - the action of getting a study up and running in line with the measurable goals of ‘time and target’. There have been few opportunities to sit down and discuss the issues.

The workshop looked at IMPROVING RECRUITMENT under three headings:

HINDSIGHT - How might the public help us understand why has a clinical research or other study has been unable to recruit, so far?

INSIGHT – How might the experience of patients, carers or the perspective of the public to aid the delivery of research?

FORESIGHT – How might we think more effectively about the ‘person’ who will take part in the today’s research and the needs/wants of research participants for the future?

Recruiting people to research studies is needed if a statistical significance is to be seen when analysing the results. The targets of recruiting to time and target exist to ensure that research studies in the NHS are carried out in a timely fashion so that the findings can be applied for NHS patients. It was unacceptable that, in the past, it often took months or years to get a trial up and running.

The workshop began with discussion on…HINDSIGHT

How might the public help us understand why the study been unable to recruit, so far?

Hindsight is always twenty-twenty. We can all look back, see things more clearly, to learn from our experiences but in the midst of trying to get a research study delivered alongside daily work, asking for help can be a good idea. By asking how the public might help allows for a more positive and non-threatening approach. It was Thomas Fuller who said, “A stumble may prevent a fall" (1).

Some researchers held a small focus group to help consider basically two questions:

What advice might you offer on both the STUDY and the PROCESS?

Are there any simple changes in the way something is explained that might make a difference?

Some researchers carried out simple surveys, others invited patients who were not trial participants to become members of the Trial Management Group. The key is having an external viewpoint that brings a pairs of fresh eyes especially from the patient and carer perspective.

Each approach offers a helpful way of gathering the 'customer' view and using those to alter the way the study is explained to patients. The language research uses is often very different from that of the public in general so it is always worth checking not just the Patient Information Leaflet but the way the trial is communicated on posters and in person.

The second area of discussion was on INSIGHT - for recruitment

Talking with a group of patients/carers specifically about recruitment during the research planning stage is a good idea. It does not matter whether it is a telephone conference, a Facebook conversation, a focus group or meeting in a coffee house.

A quote from Joseph Campbell says, “Where you stumble, there the treasure lies” (2) yet by having a plan to talk to people you can avoid the ‘stumble’.

Patients and carers offer the wisdom borne of experience. The diagnosis of any disease leaves many people in a confused state and therefore talk of research may be a step too far. It will inevitably raise the importance of the 'carer' who is too often left out of the discussions. The person supporting the patient can do more than reminding the study participant of appointments, medication and other trial requirements. The carer’s view can be a rich source of additional evidence that you might wish to gather. Thinking about the patient, their lives and needs at the point when research participation is being mentioned can therefore help recruitment.

People affected by a condition have knowledge of where best to inform people about a research study. They know their clinics and GP practices as well as the parking problems at the local Trust. This worthwhile intelligence can be the difference between a study meeting the target for recruitment and failure for a very expensive process.

Patients have their own highly complex network of contacts with other patients, through self-help/support groups and in their own communities. This can be a good way of spreading the word about research studies. Different communities, age groups, cultures have their own added value to contribute on values, perceptions and language.

FORESIGHT

“The best way to keep something bad from happening is to see it ahead of time... and you can't see it if you refuse to face the possibility” (3), William S Burroughs.

Values and Attitudes

There are many of us who are actively involved who neither want nor need to see involvement in every part of research. We want to know that the culture has changed, that the research community is thinking of peoplenot subjects and that we are working together in a shared enterprise of improving people’s health.

So, think person, think patient, think volunteer!

What would I feel like?

Would members of my family and friends take part?

Could I describe and explain it to someone on the High Street?

Would I feel informed?

Have a Plan

Have a practical plan of how you intend to work with patients, carers and the public. Don’t leave it to chance!

CONTEXT – Describe the research and why you want people to participate

PURPOSE – Explain what you want/need from people and how you will be working together - consultation or partnership

IMPACT – Outline how the discussion might help improve research

BENEFIT – Record and inform each other of the benefits

One of the first points to be raised at any meeting will be that researchers should have spoken to patients and carers at a much earlier stage. I would agree!

Discussions with a patient community at the earliest stage are more likely to reach the right priorities, come up with the most relevant questions, identify appropriate outcome measures, improve the lay summary and help shape an effective plan for involving people.

Participants were given a handout of observations made by Ignatius Maguire a lay representative on a major funding body for government research in Northern Ireland.The evidence of the impact is growing in public awareness of research, through to the design, delivery and dissemination of studies. Other examples can be found